Memories, may be beautiful and yet…


Like the corners of my mind

Misty water-colored memories
Of the way we were
Scattered pictures,
Of the smiles we left behind
Smiles we gave to one another
For the way we were
Can it be that it was all so simple then? 
Or has time re-written every line? 
If we had the chance to do it all again
Tell me, would we? could we? 
Memories, may be beautiful and yet
What’s too painful to remember
We simply choose to forget
So it’s the laughter
We will remember
Whenever we remember…
The way we were…
The way we were
– The Way We Were, Marvin Hamlisch

With the passing of Marvin Hamlisch this week, I’ve been thinking about the songs he wrote and the meaning they have for me. I was able to have the extraordinary opportunity to see him conduct the New York Philharmonic with Idina Menzel a few years ago, and will always treasure that experience. I think The Way We Were is particularly meaningful for me right now.

Memories associated with having Moebius are strange. I remember things in detail thatIhave no idea why. I could describe to you in detail the layout of the old Kaiser Pediatrics building. And probably a myriad of other medical buildings, too. Yet I also must have blocked out major things, too. I am a little incredulous that my first real Moebius memories are from the 1994 conference, when I had been going to get-togethers in LA for two years prior to that. I don’t think I was traumatized or anything by them, but I truly don’t remember them! It’s odd.

Sometimes I think that, as these lyrics suggest, being able to forget is powerful. It gives you the ability to move on, to overcome obstacles. Of course I’m likely to take the other approach and obsess over things way too much.

So I aim for a balance: to learn from experiences and mistakes, but also to give myself the space to move on and distance myself from memories I don’t need to obsess about. And somehow, that seems to work…

Moebius syndrome teddy bears have arrived!

Inspired by teddy bears with cleft palate surgery scars from the Cleft Palate Foundation, the Moebius Syndrome Foundation just ordered some bears of our own that will be available at the 2012 Philadelphia Conference (and online afterwards, depending on availability).  While we don’t have completely custom bears like Cleftline has, we have bears with very cute purple t-shirts.  One has “The Spirit of 2012 Moebius Syndrome Conference” logo on it and the other has the Moebius Syndrome Foundation logo and our unofficial motto, “I’m Smiling on the Inside” on it.

As a child, I was almost obsessed with anything I could relate to about other kids with disabilities.  Because I was also book-obsessed, many were books.  I would’ve been so excited to have these toys to play with, too.  I don’t think there were really disability-related toys when I was a child.  I remember being really excited to see that the American Girl catalog sold doll-sized wheelchairs, even though that happened when I was too old to really play with my dolls (bet my parents were thankful about that…)

So much of life with Moebius syndrome is not “fun”… so it’s great to have something cute and cuddly that is fun and spreads awareness of Moebius syndrome!

Moebius Memories

Sometimes I’m disheartened that my first prolonged memory is of doctors and hospitals and surgeries. I clearly remember getting my eye patches taken off after my second eye surgery at three and a half years old. That surgery, while not particularly invasive, was very traumatic for me. I would go so far as to say I had a bit of childhood PTSD following it – I played hospital almost obsessively for a few years and apparently frightened my mom by bringing up memories of after the surgery and random times. It’s hard for me to say if I wish I had another first memory, since after all getting the patches off was probably the easiest part of the surgery, but it speaks to me of how Moebius permeates everything. It’s not constant and sometimes not the most important element of my self-concept, but it’s definitely a defining force for me. Oddly enough, though, I remember asking my mom to explain the details of Moebius over and over to me when I was about seven, I guess I needed to hear it repeatedly in order for me to understand it. Not like a seven-year-old can really understand what a syndrome is, but I tried!

I’ve been able to cultivate so many positive memories from the many wonderful people I have been able to meet with Moebius over the years, but ironically I don’t really remember the first time I met others with Moebius. Honestly, I feel like it should be a watershed experience, but it just… was what we did. I was 9 when I first went to the get-together in LA with my family. I actually talked to my therapist about it last week (just wanted to make sure I wasn’t suppressing something traumatic!) and she confirmed my memories. I mean, I think I liked meeting people with Moebius but it wasn’t an immediate change. I remember a little of the LA Conference (although I had absolutely no memory of the fact that David Roche was the speaker. none at all!) and the continued involvement I’ve had in the Moebius community has almost been a given. I’m really glad that I was privileged enough to be involved with the Moebius community from the beginning, even if I don’t quite remember my own beginning with Moebius.